Friday, September 25, 2020

School Update (again)

 So...E is mischievous. We know this. Even still, nothing ever quite prepares me for the first teacher phone calls of the year. We have already had a couple, and have been joking about him getting suspended from home school. But until this week, it was mostly E getting stressed about assignments or being argumentative. 

Then...E (as he often does) got creative. One day before his restriction time period was about to be over from the last major incident, he decided to explore the app that our schools use to deliver virtual instruction. He quickly taught himself to control the chat features and block other kids' access and  kick other kids out of class. Immediately the teacher contacted me, of course. I'm still shaking my head. E is normally such a sweet, loving, responsible kid, it's hard to be mad at him long. We took a break from after schooling until this week; since we are starting back to doing this, he will have a bit of extra work to keep his mind occupied. E has also shown interest in some online courses in computer science & programming, as well as neuroscience, so we are investigating those for him. 

M is trying his best to be so good right now! His tantrums have steadily begun to decrease since we started back at occupational therapy. Don't get me wrong...he still has them...but now he is down to around 3 per day, which is definitely manageable. He still loves his kindergarten teacher, and if we can ever get the school-provided Apple TV to consistently work, I think he is going to really be able to participate in class better, since he will be able to see class more clearly. He dissolved into joyful laughter the first time we got the Apple TV to work and he could clearly see the iPad screen! The school really is working with him, modifying assignments when needed and showing compassion. His teacher calls or texts several times per week to comment on work and his participation. He loves to work on sight words and is really good at them! So far, it looks like he is approaching about 50 sight words, and he can sound out most CVC words. He is throwing himself so much into reading and writing that we are just working on maintaining math skills while we let him enjoy developing his reading and writing skills. We are sincerely hoping that learning to read will help deepen his language ability, which is still definitely impaired. But, with all of his teachers, both parents, grandparents, and a village of therapists who see him on a rotating schedule, progress is being made!

Thursday, September 3, 2020

School Changes

 Last week, I sent a letter to the school and county office about M and his inability to manage the demands of virtual Kindergarten. Every day, at the end of the day, he was exhausted and stimming contantly or sobbing quietly in my lap for an hour because his eyes hurt so badly. I knew that we couldn't keep up this pace and he was already avoiding the iPad and any mention of school. It was going to be awful to make him get back on the computer at the end of the day twice a week for speech, once a week for OT and once every two weeks for Lekotek. 

He's only 5!

The school's response was both quick and compassionate. I was VERY thankful. Because we went through the arduous process last year of INSISTING that they at least document his CP and VI problems in his IEP, they were able to extend some of his accomodations to include a shorter work day on the iPad. He still has to do and turn in all of his assignments, but he has extended time and he does not have to be in class on the iPad more than a certain amount of time each day (it's about half what the other students are doing). Because of this, we were also given flexibility to drop any/all of his "specials" classes if needed (we have elected to keep 2 of the 6 specials classes for now and adjust as we go). We also have an upcoming IEP meeting to address additional supports for autism and ADHD. 

The first shortened day went pretty well. Today was the second day, and while it was a little harder, it is SO MUCH better. His eyes were still hurting, but not until the end of the time he was supposed to be there.

We will see how it goes...

Monday, August 31, 2020

More Bumps in the Road

 So...we hit a few additional problems today with virtual learning.

E was miserable most of the day. I could hear his math teacher fussing nearly constantly at kids over the camera, and he is somewhat afraid of her. Sitting and repeatedly solving simple problems like putting the numbers 7, 5 and 8 in order from greatest to least is also a mind-numbing waste of time for him...he's ready for a serious study of pre-algebra (for math reference, he has completed all of the Beast Academy levels through 5B). I did tell him that if he needs to go to the restroom, eat a snack, or take a break, to let me know. He's entitled to this in person through his 504 plan, so he shouldn't receive a consequence for utilizing these accommodations at home. We are going to try to push through the rest of the week and see how we feel about continuing vs withdrawing.

M is a study in sheer exhaustion. Poor baby keeps falling asleep and can't stay awake in afternoon classes. Honestly...I simply log him into class and point the camera at his sleeping face, partly so that he doesn't get counted absent. Today was the second day that he was crying from being tired of watching the iPad all day, and he cried in my lap through my last period class because his eyes and head hurt from trying to focus. I don't know if this is something he will adjust to, at least at this level. I've sent a letter to the school about the excessive amount of time he has to be on the technology and how it is affecting him so far. I'm hoping they will have some ideas and will be able to be flexible. But, IEP or not, we are toying with the idea of home school for him too.

Waiting to see if the bumps iron themselves out or if I need to jump in and fix everything myself...

Wednesday, August 26, 2020

First Days of Virtual School

 This school year has gotten off to a rather auspicious start!

We are entirely virtual right now, due to COVID concerns; we have medically fragile family members that we want to continue to see, so we are very cautious and are trying to stay as quarantined as possible. For our family, this means that P is teaching virtual elementary school, while I teach virtual middle school and E and M are starting a combination of virtual school and home school. 

It’s been BUSY...

The first two weeks of any school year are always a challenge...adjusting to new schedules, new students, and new challenges does take a little while. So, I know that things will calm down soon, as we work toward getting into a good rhythm.

E is adjusting very well to virtual 4th grade, though he has had some trouble with the school provided laptop (the school has been so slammed with tech issues, it will probably be a WHILE before they fix his device). He says that the virtual learning is pretty boring so far, but each day has been better than the last. We’ve promised him that if he struggles too much to adjust to it, that we will officially withdraw him and file homeschool paperwork, but so far, it’s working out, E took a week break from the programs I use at home to support his learning, but has already begun returning to them a little at the time,

M is also adjusting pretty well to virtual kindergarten. He likes his teacher and he likes seeing other kids on his school iPad. He struggles a little bit with attention and following directions, and he had a colossal meltdown due to exhaustion today, but he does try. It’s definitely a challenge to try to get him to follow along while I’m trying to teach my own classes, though. I’m very thankful that P’s dad has made time to come over for a few hours Mondays and Wednesdays to help him out so I can concentrate on teaching. Kindergarten has been really...tiring...for him, though. They didn’t schedule in nap time or rest time at all, and M was so tired today that he fell asleep (and stayed asleep) during PE! I won’t lie...I let him sleep. He needed it, because he’s had therapies (speech, OT and Lekotek) after school, for which he has to be very attentive. M is supposed to also receive services on an IEP for speech/language. He also has some accommodations for cerebral palsy, though they are minimal. His services haven’t started quite yet, but will soon...and we have to have yet another IEP meeting to determine what support he needs for autism. Honestly, I can meet his needs at home without the IEP, but he will need it in place for when we return in person, the colossal meltdown he had today would have been positively nuclear if he were actually in school (we saw enough evidence of this last year, unfortunately). So, as busy and difficult as this is, it is very good for his mental health and emotional growth that he has additional time at home. Over the summer, he caught up to his peers in many academic areas (letters, reading, numbers, adding), so I am going to continue to work with him as soon as he gets used to the big changes we’ve had.

After some initial bumps in the road, I think this will work out well, even if it’s difficult!

Friday, August 7, 2020


 So...the results from testing are in. The hubby and I were somewhat expecting M to have a diagnosis of either ADHD or ASD when the results of the recent series of testing came back...but were surprised to see that he received both diagnoses (as well as a communication disorder diagnosis). So officially, M has ADHD (combined type) and level 2 ASD. As far as what this will mean when we return to school, we aren't sure. He will be home with us for first semester at least, because all school is virtual. For that reason alone, I think his academics will be fine. But the diagnoses he has received really validate the learning choices we have made for M and the level of support we've been giving him. I'm a lot more worried about what will happen when he returns to school in person (possibly this spring)...thankfully, we have some time to digest this information and make the best plans we can to help M when this does eventually happen.

Wednesday, July 1, 2020

Testing for ASD

We have been through quite a process this month, investigating whether M has autism, so I thought I would take a minute to write a little more about what we've done and what got us started. M, of course, was diagnosed with cerebral palsy just before his first birthday. All four limbs were affected, as was his swallowing, speech, and vision (due to lack of control of his eye muscles). Because he couldn't physically make good eye contact, and because his physical movement and speech were so compromised from the CP, autism didn't really occur to us. M has caught up on many milestones...he can walk, run, jump, climb and (sort of) swim. While his balance isn't great (he does still tend to fall a lot), he no longer even needs the SMOs (leg braces) that were previously necessary. His speech, while about 2 years behind his peers, has improved considerably and it is improving. As I described in an earlier post, M has shown himself to be very intelligent and resourceful, even without much verbal ability at this point. He loves to complete puzzles (roughly 100 pieces), has begun to read and sound out words, and enjoys playing with numbers and number concepts.

So with these gains, why did we suspect autism?

As M has improved, it has become obvious that there are certain skills that still lag dramatically behind where they should be, particularly since we've been working on them...and these delays aren't explained by his cerebral palsy or vision impairment.  Right before quarantine, one of M's therapists (speech) mentioned that she thought he might need an evaluation for ASD and/or ADHD, but the state was essentially shut down the next week, so we did not have the chance to follow up until recently. I should also mention that preschool had been a rather disastrous experience, so it was a relief to be able to keep him home and work with him myself during the shutdown. We have seen HUGE gains for M during this time. However, since we have been in quarantine, I have gotten so used to M's behavior that it was quite a shock when I recently saw him in a group of his peers. His language and social skills were dramatically different compared to the other children. I mentioned my concerns to his pediatrician, who immediately agreed (as M was pinging around the office completely oblivious to what was going on) and suggested an autism evaluation. Because he also had a visit with his neurologist the next day, I asked her what she thought...and she said that she was almost certain he had high functioning autism, and advised us to follow up with testing to see if this is the case.

I had NO IDEA what all goes into an autism diagnosis. As part of the process, M was referred to a team of doctors and psychologists for a surprisingly rigorous set of tests. We were given an extremely lengthy set of questions and an online screening tool; then we had an intake appointment in which the psychologist observed M play and interacted with him. He really liked her and tried to have a conversation. By the end of this appointment, the psychologist did say that she was recommending several tests designed to identify autism. She also (very gently) said that his social awareness and development seemed clearly delayed/abnormal. Instead of being offended, I was relieved, and felt validated about my concerns.

We returned to the center for two more appointments for testing. I know that one of the assessments M completed was called the ADOS, and we were able to observe him. I have a general idea of what the test is looking for, but I do not know how it is scored or how M did officially (I will find out when he get his final report). I know that M was at his absolute best, though. He did interact with the doctor testing him, and he did answer a surprising number of her questions. The other test administered was an intelligence/pre academic skills test. We actually could not go into the room with him that time, though we could definitely hear him. He was NOT at his best for the first part of this assessment. He was "stimming", hollering, and making weird voices (and likely jumping around the office) and was not really paying attention...and at one point, he got upset/anxious enough that he jumped up to leave the room and wander the building to find me, with the doctor following him. I gave him a hug, then very firmly told him to get his hiney back into that testing room and do his best. He went back willingly, and was very focused and he sounded a lot more cooperative for the rest of the time. The doctor stopped me after the intelligence test to emphasize that she felt that he had some very clear strengths in academic knowledge. When I smiled and nodded, she emphasized it again. I giggled a bit...I've known for years that M is very intelligent...but other people don't always see it right off! I am very intrigued to find out how he fared on that assessment, after her comments and his blatant lack of effort at first. I'm also hoping that they video-taped his assessment for the head psychologist to review (I think they generally do, but I forgot to look and see if there was a camera). Later, we were also asked to fill out some additional tests/surveys about M. I think one was the ABAS 3 and the other had the code SVS2.

I think, at this point, we may be done with the assessment part of the autism screen. In takes a while to get a final report on his scores, but (thankfully) we *should* have the report back before school starts. If M is diagnosed with autism, it will really help him to have his teacher aware. The elementary school he will attend actually has a magnet program for kids with ASD and has a lot of support, accommodations, and staff awareness/training that other schools simply do not have.  If he is not diagnosed with an ASD, we will at least be able to get more information and resources to move forward to help him. I honestly just want to figure out how to best help him, whether he is diagnosed in the spectrum or not.

The psychologist did remark about how I seemed like I did a "lot of fighting for him." And she's right. But my response was (and is)...both of my children were born into situations with seemingly insurmountable obstacles in front of them. Through no fault of their own, they started off far behind other kids in many ways; compared to other kids; they have so many more mountains to climb just to have a hope of ever catching up. It's our job (as parents) to move as many mountains out of our children's way as we can, so that we can level the playing field and give our kids the same chance at happiness and success that other kids have. If we have to fight to move those mountains, then we do it. We will never be able to move them all - our kids have to overcome most obstacles through hard work of their own - but at least they will always know that we are in their corner and fighting for them. It's been quite the change for me...until parenthood, I was very laid back/laissez-faire...I never would have pictured myself as the scheduling "go getter" that I have become, simply because that's what my kids need me to be. 

Sunday, June 21, 2020



The previous school year and the continual negative feedback from M’s teachers got me thinking. What if his behaviors are due to possible autism and are not something he can yet control?

I actually do not yet know for sure if M has autism, but I’m going to describe what we are seeing. M has been seen by his pediatrician, and we are following up with his neurologist and an autism specialist to determine whether or not he has an ASD.

M is currently 5. He has great days and terrible days...with no in-betweens. I’ve wondered for quite some time if he had OCD, because of his obsessive quirks. He has to do certain things the exact same way every time, and is highly inflexible in his thinking. He is very, very rigid in how he plays and often doesn’t play with toys in the way that is intended...he prefers to obsessively make toys “fall” over and over,  cram objects into small spaces, and watch almost anything that spins with an incredible intensity. M is a VERY intense, excitable child at almost every moment of every day. He still tantrums almost daily, though his worst tantrums are now somewhat rare. At school, this was not the case, as he spent the most days with at least a few tantrums where he would lie in the floor and scream until he was removed from class. I honestly think a combination of frustration and anxiety played a role here. M thrives on predictable routines and fewer transitions. In this way, being home during COVID has actually helped him.

Even though M has learned to read and adores working with numbers, parenting him is very much like parenting a much younger child (I would say he normally functions as a young 3 year old). He can express certain things verbally, but his language development is about 2 years behind that of his peers. He has recently learned how to use the pronouns “I” and “you” correctly, though he still gets confused. He has no idea how to use other pronouns, even though one of his therapists has been working on it for months now. Much of his speech is limited to “canned comments” that he repeats and uses for every situation. He does still struggle to answer social questions, such as his age and likes/dislikes, as he responds to most of these types of questions with either his name or a blank stare. He also has some mannerisms typically associated with ASD, such as occasionally flapping his hand by his eyes and banging his head against softer objects (like his mattress or the couch), as well as other sensory behaviors, similar to those E experiences.

BUT...some pieces M’s development do not seem to fit an ASD. M is a very affectionate child who adores attention and loves hugs and responds well to praise. He loves positive feedback and tries to interact with other people, especially familiar adults. He is smart and has a good bit of “academic” knowledge (numbers, letter, sight words, CVC words, shapes), and he generally likes to practice working on these. His handwriting is fantastic for a five year old, particularly one who has cerebral palsy (partly because one of his obsessions is getting his numbers and letters “exactly right”). He does complex tasks, such as climbing the pantry shelves to get chocolate syrup, pouring it into a mug, and then taking it to the table to drink as if it were coffee/chocolate milk. We actually had to put a lock on the pantry door and scare him a bit with a fictitious “pantry monster” to make him stop raiding the pantry in the wee hours of the morning (we actually took to leaving him breakfast bars on the table, to make sure he can eat if he’s actually hungry at these weird times...but I’m pretty sure it’s purely mischief). He loves puzzles and has been doing puzzles appropriate or slightly advanced for his age (50-100 piece jigsaw puzzles). He loves going to swim and has no fear of going under the water or jumping in the pool (he can swim roughly 7-10 yards before needing help). He adores music and sings well, and wants to play violin. He adored singing in the children’s choir at church until COVID shut it down. He struggles a LOT with peer-to-peer relationships, but he does try to interact with other kids. He interacts pretty well with E, even though they get on each other’s nerves sometimes, and M’s interactions are largely nonverbal.

So...we will hopefully have an answer sooner than later. The more information I can share with other adults when we DO go back to in-person school, the better. Knowing whether M has an ASD or not won’t change our parenting very much...but it might help other people understand him and help him to have more positive interactions at school.